Trials you can take part in: Statins in progressive MS, and Biotin in progressive MS

biotin 2

There’s a lot to think about if you’re considering being part of a clinical trial.

Some trials are more risky than others. These two are probably less risky, but you still need to ask:

What are the potential risks?

How many people/ what percentage have these risks

What are the potential side-effects?

How many people /what percentage get these?

What can be done if I do have a side effect or risk? Is it reversible?

What are the potential benefits?

What percentage have had these benefits?

How much of these had similar condition at a similar stage to me?

How long do they last?

Is more treatment necessary?

How much does it cost?

Will you give information either to me or to my doctor about what therapy I have undergone?

How will I be monitored? Eg scans, bloodtests etc

How often will I have to return for follow up? Is there a charge?

Will they pay my travel expenses?

How will I know if it’s worked? What’s the timescale for improvement?

Is there a placebo ( dummy drug) group? If I’m in the placebo group, and the real treatment group benefit, will I have the chance to change to the treatment group?

If I have the treatment during the trial, and benefit from it, will I be able to carry on with it long term?

Biotin

I’ve posted before about biotin in MS. A medical preparation of it has been given the name MD1003, and it is now being trialled to see its effect on people with progressive MS.  If you’re interested, here are the contacts. Don’t forget to ask those questions!

Trial Location(s)
Southern General Hospital
Glasgow
Scotland
G51 4TF
Musculoskeletal Department; Freeman Hospital
Newcastle upon Tyne
NE7 7DN
Clinical Trials Unit; Main Hospital; Salford Rooyal NHS Foundation Trust
Salford
M6 8HD
Barts and The London Hospital
London
E1 2AT
University College of London, Institute of Neurology
London
WC1N 3BG
Edinburgh
EH16 4SB
Trial Contact(s)
Primary Trial Contact
abdelkarim Bendarraz

Statins

statins

I’ve also posted a long time ago about statins.

My personal suspicion is that the beneficial effects are from lowering the bad fats in the blood, and that a safer and more healthy way to do this would be to adjust lifestyle factors; primarily diet, along the lines of the advice at http://www.overcomingms.org…. However, there may be some other mode of action, or radical lifestyle change may not be possible for you, in which case, you can register your interest for the trials, so that somebody will contact you when they start recruiting, which should be very soon ( summer of 2017), here:

https://www.mssociety.org.uk/forms/ms-stat2-information

Its’ been a long gap –  hope to post again much sooner this time,

all the best

Miranda